Hannah's Journey: Finding Joy, Belonging and Courage in Guiding

“I’ve been a Guide since I was five years old. My Mum, Nanna, Great Nan and Great Great Nan were all Girl Guides. You could say it’s a family tradition… You’ve probably seen me in my rainbow chair cruising around the site. I love my chair, especially when I put it on speed 5 and go really fast!… I have a disease called childhood dementia.”

This is how Hannah, a Guide from Leeton, introduced herself in a Facebook post during the Bush2Beach Jamboree. Her words are joyful, honest and brave — just like she is. What she didn’t say, but what her mum Rachel helped me understand when we sat down together at camp, is how Guiding hasn’t just been a tradition in their family — it has become a lifeline.

In the conversation that followed, Rachel shared how the global reach of Girl Guides has shaped and supported their journey, and how this movement has the power to create awareness for children like Hannah living with childhood dementia — a condition most people don’t even know exists. Her story opened my eyes to what advocacy through Guiding could look like: compassionate, community-led and grounded in the belief that every girl deserves the chance to belong, to be seen and to live a life filled with adventure.

When Rachel speaks about her daughter Hannah, the love, pride and quiet resilience in her voice is unmistakable. Hannah, a sixth-generation Girl Guide, has grown up surrounded by the values of sisterhood, adventure and kindness. Guiding runs through her family like a thread – her mother, grandmother, greatgrandmother and even great-great-grandmother all wore the uniform before her. So when Hannah started as a Gumnut Guide at five years old, it felt like destiny.

But Hannah’s journey hasn’t unfolded the way Rachel once dreamed. Hannah lives with a rare form of childhood dementia – one of only 17 known cases in the world. Most children with her condition do not live past the age of ten. Hannah is now older than that. She is defying expectations. And her family is determined that her life, no matter how long, will be filled with adventure, memory-making, and joy.

“I always imagined we’d be here at Jamboree together, as Guides side by side,” Rachel says. “Instead, I’m here as her carer. That wasn’t the dream — but it’s still our journey. There’s grief in that… but also so much love.”

Belonging in Guiding

For Hannah, putting on her Guide uniform is more than tradition. It’s identity. It’s connection. When asked what Guiding means to her, her answer is simple and perfect: “Friends and fun… and yoga.”

Guides has become her safe place — a place where she isn’t “the girl with dementia”. She’s just Hannah. A Guide. A friend. Part of something bigger.

Rachel calls it “a place where people don’t see her as different first — they see her as Hannah.”

At Jamboree, surrounded by hundreds of girls and Leaders, Rachel says she finally felt something she rarely experiences: relief. “Anywhere else we go, I’m hyper-vigilant. Always on alert,” she admits. “But here… there are 400 adults who have our back. I can breathe. I’m not alone.”

Moments of Light

When asked when she last saw Hannah truly light up, Rachel doesn’t hesitate.

“In the ocean yesterday,” she smiles. “Hannah has always been more comfortable in water than on land. Normally, taking her to the beach is so stressful — I’m watching her every second. But here, surrounded by lifeguards, Leaders, and friends, I could actually enjoy it too. She was free. Laughing in the waves.”

These are the moments Rachel holds onto — not knowing how many more there will be.

“We live seven hours inland. Being here at the beach, with the Guides… that’s a dream. That’s why we came. We’re just living in the moment.”

Behind the Smiles

Rachel is honest. Joy and grief live side-by-side.

“People see us smiling and think it’s easy. But there’s so much work, so much effort behind every memory we make. I don’t want sympathy — just understanding.”

Some days feel like heartbreak. Others feel like miracles. Often, they’re both.

“I laugh about being like a duck,” she says. “Calm on the surface, paddling like mad underneath.”

Yet through it all, she returns to one simple truth: “I’m just being a mum.”

Guiding as a Lifeline

Guiding hasn’t just given Hannah friends and fun. It’s given her — and Rachel — purpose, normalcy, and a place to belong.

“Hannah might not be able to climb the abseil tower anymore,” Rachel says. “But she can sit under a tree with her Patrol of three, laugh, play, and just be. That’s what Guiding is — adapting, including, loving.”

Jamboree has also sparked new beginnings. Hannah’s support carer, Sarah — a former Guide — bought a Leader uniform during the event.

“Guiding pulls people in with love,” Rachel says. “It gives you family you didn’t know you needed.”

Living for Today. Changing Tomorrow.

Hannah’s type of childhood dementia has no cure. No survivors. But Rachel is determined to change that — not just for Hannah, but for every family that comes next.

“Did you know childhood dementia is as common as childhood cancer?” she asks. “But no one knows about it. No one talks about it. Until people know, we won’t get research. No child survives childhood dementia—and that has to change.”

Her mission is simple: awareness.

“Even if every Guide in Australia could say, ‘Yes, I’ve heard of childhood dementia,’ that’s a start. That’s another step toward hope.”

What She Hopes Others See

When people see Hannah laughing with her friends, dancing at camp, or signing “toilet” just before boarding a rollercoaster (a moment that accidentally saved her from being stuck mid-ride for hours), Rachel hopes they see more than bravery.

She hopes they see possibility.

“Guiding is where she can live her best life,” Rachel says. “Where she’s not ‘other’. Where she’s just Hannah — a Guide.”

One Word to Describe it All?

“Everything I love is in Guiding,” Rachel smiles softly. “Being outdoors. Being together. Having fun. It’s all here.”

Rachel’s story is a powerful reminder that childhood dementia is not just a medical diagnosis — it is a lived reality for families in our communities, and one that too often goes unseen and unheard. Public understanding and awareness are critical if we are to change that. Girl Guides NSW, ACT & NT is beginning to explore how our organisation can stand beside families like Rachel’s — not only in compassion, but in advocacy. This includes encouraging Units and Districts to take part in the Childhood Dementia Initiative’s FACE it awareness activities, helping shine a light on this under-represented issue. Because when we use our collective voice — as Guides, Leaders, families and supporters — we don’t just raise awareness. We create hope, understanding and the possibility of change.